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What is Patient Activation? Patient Activation is the skills, knowledge, and motivation of individual patients to participate as effective members of the care team 1 Research shows patients who are more activated:  Engage more in self-care and preventative behaviours and adherence to medication  Significantly lower rates of visits to doctor, ER and hospital stays  Engage more in healthy behaviours  Engage more in disease specific self-management behaviours  Engage in more health information seeking behaviours  Stronger patient-doctor relationships 1 (Hibbard et al 2004)

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Why should we interested in Patient Activation? 15 million people in England live with some kind of Long Term Condition Need to promote greater health to avoid developing LTC Promotion of self-management for those with LTC is important to improving patient outcomes and quality of life and reducing the impact of LTC on healthcare providers Patient Activation can be used to identify people who may benefit from specific, targeted interventions Can be used to assess the effectiveness of interventions at population level

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Patient Activation Measure Patient Activation Measure (PAM) is a well validated tool aimed at measuring the level of patient activation engagement in their healthcare The 13 item PAM questionnaire requires patients to answer 13 questions with one of 5 possible responses: Strongly agree Agree Disagree Strongly disagree Not applicable The PAM produces activation scores ranging from 0 to 100, which can be used to categorise respondents according to their ‘activation‘ level into one of the Four Levels

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Definition of PAM scores Activation LevelPAM Score (max 100)Definition Level or lowerIndividual not prepared to take an active role Level to 52.9Believes they have an important role but lacks the confidence and/or knowledge Level to 66.0Beginning to take action but may still lack confidence Level or aboveIndividual has adopted many self-management behaviours (may still not be able to maintain actions over time or during stress

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Data collected from kidney patients: Completed PAM data and background questionnaires were obtained from 296 patients across the 12 kidney units between February and May 2012; 256 of which were eligible for analysis. – PAM data: Patient activation level (1-4) Patient activation score (more useful in follow-up) Answers / trends to individual PAM questions – Patient background data: Age Sex Ethnic group Time since diagnosis Current modality Previous modality Care plan – type & how long Letters about care and who from (willing to be contacted for interview)

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A summary of the PAM levels obtained from the individual units is shown below.

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Comparison of Average PAM Scores for People with End-Stage Kidney Disease in England Compared to People with Long Term Conditions in the UK: Average PAM22 Score for people with long term conditions in UK = 59.43* (correlates to a mid level 3) Average PAM13 Score for people with end-stage kidney disease in England = (correlates to a borderline level 2 / level 3)

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Time 2 data: 8 – 12 months Follow up Eleven units returned a total of 131 completed PAM surveys, of which 72 surveys matched patients that had responded in time 1. All patients in time 2 responded that they had a care plan patients showed an increased in PAM level - 16 had a decrease - 27 patients showed no change in their PAM level

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% PEOPLE AT EACH ACTIVATION LEVEL FOR PEOPLE WITH ALL LTC IN THE UK AND US (PAM) COMPARE TO PEOPLE WITH END STAGE KIDNEY DISEASE IN ENGLAND – ALL TIME 1; TIME 1 AND TIME 2 DATA FOR PEOPLE WHO COMPLETED THE PAM AT BOTH TIME POINTS (PAM 13).

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Not just about Patient Activation... The CS – PAM Reliably measures attitude of clinicians towards the role of patients in the care process 1 Clinicians strongly endorse that patients should follow medical advice but are less likely to endorse that patients should be able to make independent judgements or take independent actions 1 – Hibbard, Collins, Mahoney & Baker Health Expectations 13:65-72

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Case Study…. In 2010 Jane’s kidneys failed at the same time as she was diagnosed with breast cancer… “The breast cancer treatment was like a different world, wonderful resources, choices, information about all aspects of the disease and the treatment that was to come; there was such support. Kidney disease is like a hidden thing which happens in dark places in the basement of hospitals; cancer care takes place in nice, bright, pleasant places. The difference was enormous.”

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Jane continued …. “Kidney disease is very complicated and the language used is very difficult to understand but it’s important to give people control… the doctors were discussing my case just outside the room. I needed to know what was going on and be involved in the choices that were made. When you have more information you feel empowered; it makes you feel you’re in partnership with the doctors and nurses.”

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What Have We learnt? 1.Use of the PAM is feasible within the English NHS to help identify people with, or approaching, end stage kidney disease who may benefit from interventions to help them take more of an active role in their healthcare 2.The low scores, when compared to all long term conditions, suggest that increased activation of this group of patients should be investigated through the use of novel interventions, such as care planning and approaches aimed at improved shared decision making – particularly older patients and patients on the conservative care pathway – in order to improve quality of life and health outcome in this group 3.Raises questions about the suitability of PAM for people approaching the end of their lives 4.Not just about patient willingness to be part of the care team – health care professionals equally have a role to play 5.Recognise for some older and frailer people, taking a more active role in their healthcare may be unrealistic